Start of treatment

[Sascot]

Hi, thanks again for all the words of suppost since I joined. We had the barium meal yesterday which seemed ok, so no horrible surprised there, thank goodness. Unfortunately my son cannot tolerate the modulin or elemental, so we are going down the root of the nasal tube! I am rather upset.
Does anyone know what it's like for someone to have to wear one to high school? Worried he will get teased.

 

[DustyKat]

Hey Sascot,

Good to hear that the test went well.

I'm sorry to hear about the diet though. I don't have any experience with NG tubes but I know Tesscorm's son has one and he inserts it each night. I'm sure she will be along later with lots of info.

Good luck hun and keep us posted.

Thinking of you, :hug:
Dusty. xxx

 

[Dexky]

Sorry Sascot, me neither!! Kids will do what they do! He'll learn who his true friends are and the hell with the rest We can't protect them from everything and we shouldn't try! It's character building and it's sorely lacking nowdays!

 

[Misty-Eyed]

Hi Sascot!

How old is your son? I was in the same position when I was 12. I couldn't stand drinking the elemental drinks and so it was decided that I'd have a NG tube. Please don't be upset! If it helps your son it'll be worth it.

I went into hospital (Great Ormond Street) for a week to learn how to put the tube in myself and to build up the feeds so my stomach could tolerate it ok. The first time they put in the tube I coughed a lot and it was a little traumatic, but I quickly got used to it and it was fine and I could put it in myself with no problems.

After that I went home and had barrels of the feed in powder form that my mum made up with water for me before putting it in the pump and pumping it into me over night. Was weird waking up full! This meant that I could take out the tube myself in the morning and be tube free till the night when i was due my next feed. The only problems I really had with the tube was when one night I was testing it to make sure it was in my stomach. To do this I had to syringe some stomach fluid out of the tube and test it on litmus paper (I thought it was the coolest thing in the world at the time). But one day I accidentally squirted the syringe with my stomach fluid inside it all over my mum's new blinds! Of course it stained and she wasn't happy with me! haha!

But don't worry about teasing too much. I honestly wore mine to school most of the time to show it off and took my litmus paper in to school for a science lesson to show everyone else.

If you have any questions then please ask!

 

[Tesscorm]

Hi Sascot,

Pretty much as Michelle explained... minus the blinds! :ysmile:

My son inserts it in the evening and removes it each morning. It did not take him long to learn how to do it (just a couple of days). The gag reflex seems to be the obstacle to overcome! I told my son to visualize the size of the tube, picture the size of a big bite of food and realize that he really wasn't swallowing anything 'big'. I've never had to insert a tube myself but maybe that visualization helped him??? (Also, drink water while inserting the tube!! Helps to 'swallow' the tube.)

The whole 'feeding' process brought about only a few annoyances for my son - his feed ran approx. 10 hours which meant we had to get it started by 9pm to have it done in time for school. He was sometimes annoyed that he had to drag the whole apparatus around with him in the evening from room to room but was just a minor issue. Ask if you have some flexibility with the ingestion rate. My son did (200 to 300 ml/hr), so if he had a later hockey game, we just ran the feed at a higher speed that night (I also gave him the reassurance that if there was a conflict, I would allow him to miss first period of school rather than skip the game - we're Canadian; hockey always comes first! :biggrin: LOL).

As far as friends, my son had many friends come over while he was wearing the tube. He had a very casual attitude about the whole thing and this probably helped keep his friends' reactions casual as well. He couldn't sleep over at friends' homes because of the feeding (another bit of an annoyance for him) but he just invited his friends to come sleep at our place. His friends were curious about the tube and he always took them into the bathroom to watch him insert it. Even at 16/17 years, the comments I heard were 'omg, that's cool', :ycool: 'wow, how do you do it?', etc. However, of course, these were all friends who knew why he was wearing the tube... might be a bit different at school amoungst kids who will just be curious without knowing the reason. But, as Michelle also said, amoungst his friends, I think there was more of a 'show off' factor than anything else.

Try not to be too upset about the whole thing. It did hurt me at the beginning to watch him needing to learn to do this and deal with the annoyances but, if it can work, it's a great treatment option. No side effects at all and the benefit of nutrition along with treatment.

Just let me know if you have any questions...:ghug: Good luck!

 

[Tesscorm]

Oh yea, just thought of one thing...

As Michelle mentioned, you extract a bit of the stomach fluid to test positioning. Well, my son and I did that and the fluid came out bright red! We were both just looking at it, afraid to say what it certainly looked like - blood! My heart literally stopped! When my son suddenly laughed and said 'oh yea, I just had a red freezie...'! OMG!!! :ybatty: :ymad:

So... NO red freezies! LOL:ylol:

 

[Sascot]

Thanks for the info/support. We go into the childrens ward tomorrow to get the tube inserted. They really don't encourage the kids putting it in themselves and seem of the opinion that once it's in it's in for the 8 weeks. Might try speaking to them after I see how traumatic it is for him putting the tube in!
I will just be glad to get him sorted - even he is now desperate to feel better.
Hopefully in a couple of days I will be all chilled out!

 

[Tesscorm]

Oh I sure hope it works for him! Poor kid, it's so hard when you know they aren't feeling well! My son's symptoms would come and go, so I can't really say how soon the formula started to make him feel better...

Don't be too worried if it's difficult to put the tube in the first time. It's certainly not a 'natural' feeling. My son said it felt like water had gone up your nose. Having the tube in bothered him a bit the first day (the first few days, he had it in most of the day, working down to 10 hours), not painful, just the sensation of something in your throat, but that seemed to disappear by the second day.

Best of luck! :ghug:

 

[DustyKat]

Just out of curiosity, do you put the NG tube in the refrigerator before inserting?

Dusty. xxx

 

[Tesscorm]

Before I leave for work, I unhook the NG tube from the tube (bag) feeding the formula and I then wash the formula tube/bag and leave it to dry.

While 'just' the NG is still in Stephen (he's usually still sleeping), I flush it with a bit of water (inject water through NG tube). Whenever he gets up, he removes the NG tube, flushes it again with water, gives the whole tube a quick wash and leaves it out to dry for the day.

I make the formula in the evening, fill the bag and refridgerate until about an hour before he's going to hook it up (should be given at room temperature).

 

[Tesscorm]

Oh, also he dips the tip of the NG tube in a lubricating gel before inserting it..

 

[Misty-Eyed]

Really? That's odd. Unfortunately I was really ill when I had my tube and id frequently puke up in the night and the tube would come through my mouth so I had no choice but to take it out and reinsert it.

Im sure you will feel more chilled out! I hope it goes ok!

Dusty- I never kept mine in the fridge but I used to love the cold feeling in the back of my throat when I flushed it with cold water. Mine had a guide wire too to help insert it but it was easier for me to not bother. I just swallowed loads when i put it in.

 

[Tesscorm]

Have a bit of an odd question... I have heard from a few sources that coconut water (not milk or juice) is very healthy and anti-inflammatory, even his dietitian suggested that it would be a good drink for him. Unfortunately, he just doesn't like the taste. I know that fish oil supplements are anti-inflammatory as well, and will go that route if necessary, but the coconut water has additional health benefits as well as being anti-inflammatory.

Do you think I could mix the formula with the coconut water instead of regular water? I did call Nestle (maker of the formula) and they said they didn't believe that it would affect the consistency of the formula but would affect the nutrients being ingested so I should speak with his doctor. Hesitating to call the doctor or dietitian just for this... so wondering what you all think??? He's on maintenance with all foods allowed, so I'm thinking if he's allowed to drink the coconut water during the day, would it make a difference if he has it mixed with the formula?

 

[DustyKat]

In my way of thinking if it affects the nutrients being absorbed it sort of defeats the purpose of the formula in the first place.

How much coconut water are you supposed to ingest each day?

Is it possible to put it down the tube separate to the formula and without it affecting the ingestion of the formula, time wise?

Dusty. xxx

 

[Tesscorm]

Re your first point - yes, that's exactly my worry; that by mixing the coconut water I will change the composition of the formula and may inadvertently affect the absorption of certain nutrients. But, I wasn't sure if I was 'overthinking' and 'over-worrying' the whole composition/absorption issue...

When he was on the initial six week period (formula only), he was allowed clear liquids. Coconut water was mentioned by the dietitian as a drink he was allowed and also for its health benefits but amount was never discussed. I have just been trying to get him up to one can (520 ml) per day but even this has been unsuccessful. It's too bad as coconut water is anti-inflammatory, high in potassium (which might also help his back/muscle pains) and provides electrolytes (with less sugar and no chemicals rather than Gatorade after sports).

I have thought of giving him the coconut water separately by NG and Stephen has said he would much prefer the coconut water by NG rather than drinking but schedule has been a bit tricky. But, now that school is starting on Tuesday, I will rethink this... being on a more structured schedule may make this possible...

(By the way, I've tried the coconut water, it's not bad. It's really not like I'm trying to give him something horrendous! :smile.

Appreciate your reply... was looking for confirmation of my concerns or that I was being overly concerned about it... Thanks

 

[Sascot]

Well that was another horrible experience my poor boy has had to go through. We were in the hospital yesterday and overnight into today so he could get the NG tube inserted and start the modulin through the tube.
Poor thing hated the tube going in and really hates the feeling of the tube being in especially in his nose. He is not a happy child at the moment!
Does the horrible sensation of the tube go away? I was expecting it to be uncomfortable going in, I wasn't prepared for how unhappy he is with it in.
They do not take the tube out for the next 8 weeks so I am really hoping he gets used to it.
Tomorrow is his first day back at school with the tube, nervous!

 

[Tesscorm]

I'm sorry he's had such a rough day today. My son was also bothered by the sensation of having the tube in for the first day or so (especially bothersome the first day...). He was upset as he felt he would never get used to that sensation but, it really only bothered him for a couple of days.

By the second day, he was beginning to become accustomed to the sensation and thinking about it less and less... I don't remember that there was much we could do for him during the more 'uncomfortable' moments other than distraction...

Will he be fed the modulen overnight? The sound of the pump was another annoyance for the my son for the first week. I rigged it up so that the pump was covered/wrapped by a towel which muffled the sound a bit without interfering with the tubes.

I really hope tomorrow is a bit easier for him! :ghug:

 

[Misty-Eyed]

Yeah he should get used to the feeling. Try to get him to stop swallowing if he's doing it a lot because thats when you can feel it the most. I'm pretty sure he'll get used to it and find it weird when it's eventually taken out.

 

[LilyRose]

Just top say that I am thinking of you. I know it is so hard when our kids are upset and unhappy. It sounds like the sensation of having a tube in will get easier and it is something you can get used to. I also hope that once he feels better in himself that will help him feel better about the tube.

Lots of hugs,

Take care
LilyRose

 

[DustyKat]

I hope things are getting better for your boy hun...:hug:

Thinking of you, :heart:
Dusty. xxxxxxxx

 

[Tesscorm]

Hope your son is feeling better and becoming a bit more accustomed to the tube... :ghug:

 

[Sascot]

Well that's us one week done on the Modulin! Only 7 to go. :thumright:
So far so good - we are getting into a routine and Andrew is now used to the tube and feeds. School seems to be going ok - no one is giving him a hard time so far, hope it lasts! The kids are off school on Monday and they have a week off in October so really only just under 6 weeks at school with the tube.
For the first time in months he was actually giving his sister cheek and running after her. Funny how I am happy that he is being a bit naughty - means he is getting better!

 

[DustyKat]

Thanks for the update!

It's so fab to hear that Andrew has settled into the tube and feeds! YAY! And what a relief for you too Mum...:hug:

I hope things continue to go well for him at school and yes! it surely is amazing the things we are thankful for when our kids starting acting like their *normal* selves again. :lol:

Dusty, :heart:

 

[zipster1]

Hi sascot. sorry your wee fella's had such a hard time of it! They often amaze you with how resilient they are. Hoping you and your family sail thru the nxt few weeks.

 

[LilyRose]

That is great news. I know we don't want our kids to go through these things, but isn't it amazing how they cope. I am glad his school mates are being great. And I hope the next few weeks go really quickly and he feels much better in himself.
Take care of yourselves,
LilyRose